Educating Loved Ones about Your Health During the Holidays

(Note: This piece focuses on the winter holidays but applies equally to other times of the year when loved ones gather together.) Chronic health problems pose a challenge to relationships any time of year. Most people don’t understand the debilitating effects, physical and mental, of unrelenting pain and illness—unless they experience it themselves or are the caregiver for someone who is experiencing it. During the rest of the year, many of us have learned to limit interactions with others in order to manage our symptoms.

But when the holidays arrive, if we’re not careful, we can find ourselves suddenly thrust into the middle of a lively and chaotic social scene where we’re expected to participate in a range of activities, often for days on end. As a result, this time of year can be a recipe for double disaster—the increase in activity exacerbates our physical symptoms, while coping with sadness, frustration, and maybe even guilt about our physical limitations gives rise to emotional pain.

No wonder many of us with health problems dread the holiday season.

We can do a lot to minimize the negative effects of the holidays on our health by being sure that loved ones know about our limitations. If you’re one of the many people with chronic health problems who don’t look sick, the burden is on you to make your condition “visible.” If you don’t take this pre-emptive action, people’s expectations of you may be way out of line with what you can handle.

Here are some suggestions for helping loved ones understand what your life is like so that all of you can better enjoy this time of year:

Share information with them from the Internet or from books.

A good way to begin to educate loved ones about your medical condition is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you'd like them to know about you. In your accompanying note, keep it "light"—you could joke that "there won't be a test." But also make it clear that this favor you're asking is important to you.

In person, by phone or email, let loved ones know in advance what to expect from you during the holidays.

Whether or not you've shared information from a neutral source, it's good to follow-up by communicating with loved ones about what your life is like. You might start by telling them that how you feel on any given day is unpredictable. Even if you rest for days in advance, you may feel sick or be in terrible pain on the actual day of a gathering. The unpredictability of chronic pain and illness is the single hardest concept for others to understand—that we can spend weeks in full “rest mode” before a big event, yet still be virtually non-functional when the day arrives.

When communicating with loved ones, be sure that your tone is not accusatory. Use the word "I" more than the word "you." Without complaining, express how hard it's been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays. Let them know that, as much as you’d like to participate fully, you may have to skip some events or come late and leave early or excuse yourself at some point and go lie down.

In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting that I might be doing so.

This happened to me this past Thanksgiving. I had to leave the table mid-meal because I was too sick and in too much pain to continue to sit up. But I felt okay about leaving without explaining myself (so I didn’t interrupt the ongoing conversation), because I knew that my husband and my son and my daughter-in-law would know exactly what was going on with me. So, although there were others at the table who probably didn’t know why I disappeared, the fact that I knew that these three people did know, gave me the courage to do what I had to do in order to take proper care of myself.

Enlist the help of an ally.

If you find it hard to explain to loved ones in advance about your limitations, think of whether you have a close friend or family member who understands what you’re going through and ask that person to help you explain your condition to others. You could ask your ally to talk to loved ones on your behalf or to be present with you when you explain to them what to expect from you during the holidays.

Having a neutral third party involved like this can make a tremendous difference: it can magically turn your loved ones into good and sympathetic listeners.

If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally (my husband) because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Think long and hard before you decide there’s no such person in your life. Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. That said, if you have no ally (I know that’s the case for some), I can be your ally via this article: if you think it would be helpful, send the piece to those you wish would understand your circumstances better.

Recognize that some loved ones may never accept your limitations, and resolve not to let that cause you to doubt yourself.

Some family and close friends may never accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability to accept how you are is about them, not you. Don’t let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness and mortality, or they may be so caught up in struggles of their own that they’re not able to see their way clear to empathize with you.

Just as we can’t force people to love us, we can’t force people to accept us as we are. I’ve found that getting angry at others when this happens just exacerbates my symptoms. The Buddha said that when we direct anger at another, it comes right back to us—like fine dust thrown against the wind. That’s why it’s important to protect ourselves by not letting others’ lack of understanding upset us.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel misunderstood by family or close friends, here’s what I do:

First, I acknowledge that I feel hurt. Trying to pretend I’m not feeling the way I’m feeling only intensifies the emotional pain.

Then I reflect on how there are many possible reasons for their behavior and how I need not take it personally.

Next, I resolve not to let their treatment of me affect how I treat myself: regardless of what they think, I know I’m sick; self-care is my first priority.

Finally, I work on genuinely wishing them well, despite their lack of understanding. A little bit of well-wishing can go a long way toward relieving my own emotional suffering.

My heartfelt wish is that your loved ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness.

Thank you, dear Toni, for your wise advice and insights - particularly re those who might never really understand.
My walking gets slower and slower, unpredictably. This becomes more of an issue for strangers at this busy time of the year when so many people are tired and frazzled.
When I have to go out to the shops, which involves crossing roads as well, I sometimes use my walking stick even when I don't really need it. That way, strangers have been 'signalled' that this pedestrian might be slow. I notice there's a much greater level of kindness and understanding from them, rather than nasty looks, screeching tires, yelled abuse etc. One dear elderly woman even blew me a kiss!

Thank you so much for your kind comment. I have done that too -- used a cane when I don't need it. It's amazing how well people treated me. Little tricks of the trade I guess we could say. Warmly, Toni

Dearest Toni, another wonderful article as always.. great and helpful information.. I do completely understand what its like to have to walk out in the middle of dinner and just go lie down, when i first got ill before we knew what it was i had to do that one christmas.. everyone was fine with it because we always have dinner at home so that year it was just me,tom, his mom, his daughter, and that yr his two cousins and their kids came.. but they were ok they never even noticed i was gone, i told tom i was going to lie down and he knew what was wrong.. that was i think 6 yrs ago.. since then no one comes to dinner except this one older gentleman that for all intense purposes lives with us but he travels so much he lives out of his van because he is a fair vendor so hes always on the road looking for "shows'.. but he will be here for christmas as usual and he is completely understanding if i need to leave the table to lay down or something..tom and his daughter does most of the cooking, i help with what i can from my rocking chair at the table because of my oxygen.. but we have very quite, quaint dinners anymore with the good china and all, and we just love the peacefullness of it... sometimes my daughter and her girlfriend will come down or my youngest son will come up.. my daughter came up for thanksgiving this yr and she wouldn't let me get up from the table she waited on me hand and foot, i was having a bad day despite doing my damdest not to..but it was a great day and i'm sure christmas will be too..
have a happy holidays with you and yours.. much love and metta to all..
love, tina

Tina, your story inspired me... great example of the power of acceptance. Toni's post is outstanding, and I'm now experiencing the truth of the need to pace myself. After 3 weeks of more energy than usual, the setback has arrived. I'm practicing acceptance too, enjoying the peace and solitude of resting at home and eating more carefully. Blessings to all!

Dear Judith, thank you.. I hate when you get those good times then bam the bad ones hit ya like a brick wall again.. grrrr.. had more than my share of them in my life.. hope you are taking care of yourself now and getting your much deserved rest.. Blessings to you too... :)

Great ideas here! Toni, excellent reminders for me to take care of myself. My brother's birthday is on Xmas and I'm in charge of his cake, which I can make ahead. I love to do it and I make a special, almost no carb cake because he's diabetic. But the frosting needs to be made 'last minute'. Last year I was so tired I couldn't stir it. My brother ended up making his own frosting (which he didn't mind at all) but I felt so guilty about, that I broke down into a puddle of tears and everyone got upset because I was so upset. This year I vow to have a whole new outlook on things. I know I may be too tired to participate as much as I'd like, and so be it. My family never gets upset, I put it all on myself.

Also, Desney, GREAT idea about the cane! I'll use mine at the train station so that it will be clear why I'm walking slowly to get to the train and the porters will not be waiting so impatiently for me, waiving me forward as if I'm just dawdling along for no reason. Brilliant idea!

And Tina, I've always loved how you and Tom have such a loving and supportive relationship. Such wonderful understanding you both have of each others needs. You are both so lucky :)

Mary, thank you and Happy Birthday to your brother.. he is very fortunate to have you to do that all for him.. and the cake sounds yummy.. you will have to send me the recipe, Tom is a diabetic and we watch our carbs because i have been borderline for 20+ yrs.. don't be so hard on yourself, it sounds like your family is a very understanding family of your situation and very compassionate of your needs... so you rest and take care of your self as much as you need to this holiday season.. don't over do it.. {{{BIG HUG}}}
love, Tina

THANK YOU FOR THAT PERFECT ARTICLE. NOW, IF ONLY I COULD JUST GET OVER WANTING TO BE IN ON EVERYTHING--AFRAID I'LL MISS SOMETHING, YOU KNOW!
YES, THOSE BAD TIMES ARE REALLY THE PITS! AFTER HAVING THAT RESPITE OF ''ALMOST'' FEELING NORMAL!
SOMETIMES I THINK I LIVED MOST OF MY LIFE RUNNING ON ADRENALINE UNTIL IT WOULD GIVE OUT ONCE AGAIN.
HAVE A WONDERFUL CHRISTMAS, TONI & ALL MY ILL PERSONS WHO READ THIS! BJ.

This is brilliant Toni, as always. I think this time of year brings more pressure than any other (and maybe all the others put together). So, your deep insights and extremely practical, down-to-earth advice is invaluable. Thank you for this and thank you for being you :-). love rose

Just a note from me-getting better even after a bit of relapse and no I do not fully know why but want to say thanks for being there. May never be fully well which is harder to face given my face on the candy store window but best to you Toni-keep up what you do- hug.

I think this can be used for any limitations not just physical ones. Many people have mental conditions that make it hard to be in crowds for extended periods of time. I have social anxiety and I don't feel myself in crowds.I constantly worry about doing and saying the wrong thing the wrong way. I go over in my head many times what I am going to say and how I am going to say it, which makes me worry more, which makes me think more and I feel like crawling out of my skin. It's a horrible feeling and comes off as me being bitchy when I finally decide to say or do something.Then everyone gets mad and it gets worse and I end up just wanting to leave.